Viral hepatitis: not just a silent killer but also a silencer

On Zero Discrimination Day (March 1st), the World Hepatitis Alliance (WHA) is encouraging the hepatitis community to challenge misconceptions and speak out about the devastating impact of stigma and discrimination across the globe.

Stigma and discrimination around viral hepatitis has long prevented people from speaking openly about their illnesses. For those brave enough to disclose their status, their reward, more often than not, may be social exclusion, diminished employment opportunities or unjust barriers to receiving healthcare. This harsh reality can have a devastating impact on an individual’s personal life and psychological well-being and prevent people from accessing much-needed diagnostics and treatment. There is no doubt that stigma and discrimination further perpetuate the epidemic of viral hepatitis.

The findings confirmed and quantified what we had long suspected: stigma is felt in almost every corner of the globe and its impact is far-reaching.

We recently launched our Holding Governments Accountable: World Hepatitis Alliance Civil Society Survey Global Findings Report, which surveyed civil society organisations from 72 countries to better understand experiences of stigma and discrimination across the world. The findings confirmed and quantified what we had long suspected: stigma is felt in almost every corner of the globe (people from 93% of countries surveyed reported stigma and discrimination to some degree) and its impact is far-reaching (respondents reported on average 6 different types of stigma and discrimination).

Certain forms of stigma were shown to be especially common: almost 3 in 4 respondents report issues with internalised stigma; over half of respondents report having been socially excluded due to their illness; and 42% have experienced stigma and discrimination in the workplace.

However, it isn’t until we hear the personal experiences behind the statistics that we can grasp the true impact of stigma and discrimination. Since working at WHA, I’ve heard so many of these stories: stories from people who were prevented from marrying the person they love to people being stopped from boarding a plane. Accounts like these can be found on our Wall of Stories web platform, which is a space for people to talk openly and freely about their experiences.

One story from China stressed the drastic measures stigma can drive people to take. Dee Lee, Director of Inno Community Development Organisation and hepatitis B carrier was subjected to mandatory testing when applying for a job but desperate for the role, he asked a friend to provide a blood sample. After securing the position, he witnessed stigma and discrimination in the workplace first hand: his colleagues living with the disease were forced to sit at the “hepatitis table” specifically designated for them with a flag revealing their status.

Cheating the test and hiding his status while others were excluded in this way left him feeling guilty and ashamed but inspired to set up his organisation and challenge stigma. Our report found such experiences to be regrettably commonplace with 40% of respondents being excluded or ostracised in the workplace and 40% being denied employment opportunities entirely. While Dee Lee was strong enough to turn his experiences into a positive, for so many others stigma prevents people from fulfilling their potential.

“The person who discriminated against me first was myself” reveals George Kalamitsis, Chairman of Hellenic Liver Patient Association, Greece. Self-stigmatisation can include feelings of blame, worthlessness, internalised shame or a sense that viral hepatitis in a punishment for certain behaviours. It is truly heart-breaking to learn that 72% of people living with the virus experience these feelings. Self-stigma has both emotional and long-term physical consequences, often preventing people from speaking out and breaking down the confidence needed to seek help and access medical care.

Tackling stigma and discrimination will be fundamental to finding the 300 million people living with viral hepatitis unaware, linking them to care and ultimately eliminating viral hepatitis.

In fact, this can be one of the biggest barriers to diagnosis. Misconceptions around transmission routes, prejudice towards the social groups or lifestyles associated with the disease, or fear of discrimination once a diagnosis is confirmed all prevent people from getting tested. Tackling stigma and discrimination will be fundamental to finding the 300 million people living with viral hepatitis unaware, linking them to care and ultimately eliminating viral hepatitis. We are currently conducting a global survey to better understand barriers to diagnosis and the context in which they are experienced. Information gathered will inform future programmes designed to find the ‘missing millions’, so please take five minutes to complete the survey here.

Despite stigma having a devastating impact on so many aspects of an individual’s life and being a hindrance to our elimination efforts, very few respondents felt that their government was effectively addressing it at a national level. In response to this, today on Zero Discrimination Day, we launch our #StigmaStops campaign that aims to highlight the true impact of stigma, dispel myths and encourage people living with the disease to speak out. Find out how to take part and watch our video message here.

Hepatology, Medicine and Policy is now accepting submissions on this and related issues. For more information, visit: www.hmap.biomedcentral.com.